A Phenomenological Exploration of the Early Needs of Caregivers of People With Alzheimer’s Disease: A Pilot Study

PURPOSE: The purpose of this pilot study was to investigate the needs of caregivers, of individuals with Alzheimer’s disease (AD), early in the caregiving experience and explore the feasibility and tenability of the topic for a larger study. Occupational therapy practitioners (OTs) should address caregiving as an occupation to support the health and well-being of caregivers. Moreno et al. (2015) report that a substantial body of studies have identified an increased risk for adverse health consequences, both mental and physical, institutionalization, and premature mortality among informal caregivers. Timely access to dementia care services is considered crucial to enhance quality of life and reduce caregiver burden (Kerpersshoek et al., 2016).

DESIGN: A qualitative study based on a naturalistic inquiry design was conducted using phenomenology. Purposeful sampling was used to select participants who could provide information-rich experiences. Phone calls and letters were sent to local dementia facilities, the Alzheimer’s Association, and an email sent to all members of the Massachusetts Association of Occupational Therapy to aid in the recruitment of participants. Snowball sampling was also employed. Caregivers were eligible for the study if they were over the age of 18, a primary caregiver for a person with AD, and had been caregiving for the care recipient within 1-10 years from initial diagnosis of AD.

METHOD: Interviews were conducted and recorded at a location chosen by the participants for their comfort and security. The purpose of the study was explained and informed consent obtained. A semi-structured interview guide was used to explore caregiver experiences and needs related to supports and resources, timing of supports and resources, and resources in the time immediately following the care recipients’ diagnosis of AD. Caregivers were also asked to reflect on what could have helped them prepare better for the caregiving experience early on. The recordings were transcribed then analyzed using NVivo qualitative data management software. The data were interpreted and sorted into meaningful themes to explicate the personal experiences disclosed.

RESULTS: 4 caregivers participated in the pilot study. 3 themes emerged from the data; initial response, lack of support, and timing of information.The participants were devastated by the initial diagnosis and were not given advice on where to find support but each found a way to care and provide for the care recipient. Aside from the care recipient being referred to neurology, not one participant reported referrals to any other specialist, early in the caregiving experience. Participants reflected on how helpful it would have been to have a referral to OT and receive more information about the diagnosis and progression of AD sooner. When participants were asked what they would recommend to new caregivers, they divulged ideas that had helped them cope with caring for their loved one with AD. The main response was to educate,edcuate, educate and not be afraid to ask anything. They also felt it important to talk to someone or to find a support group.

CONCLUSION: This topic should be explored further in a larger study with additional participants to exhaust theme development and support new caregivers. The preliminary themes identified here indicate that it may be possible to decrease some of the negative effects of caregiving if caregivers are provided with necessary supports and resources. OTs can provide support to caregivers as well as the person with AD. Physicians should be educated on what different professions, including OT, can provide to caregivers early in the caregiving experience to potentially prevent the negative physical and psychosocial outcomes they face.

References

Kerpershoek, L., de Vugt, M., Wolfs, C., Jelley, H., Orrel, M., Woods, B., … Verhey, F. (2016). Access to timely formal dementia care in Europe: Protocol of the Actifcare (ACcess to Timely Formal Care) study. BMC Health Services Research, 16, 1–7. https://doi-org.baypath.idm.oclc.org/10.1186/s12913-016-1672-3

Moreno, J., Nicholls, E., Ojeda, N., De los Reyes-Aragón, C., Rivera, D., Arango-Lasprilla, J., … Arango-Lasprilla, J. C. (2015). Caregiving in dementia and its impact on psychological functioning and health-related quality of life: Findings from a Colombian sample. Journal of Cross-Cultural Gerontology, 30(4), 393–408. https://doi-org.baypath.idm.oclc.org/10.1007/s10823-015-9270-0